Long wait for diagnosis, feeling a bit lost

Hi everyone

My name is James. I'm 33 years old and and have suffered from anxiety, depression and isolation since I was a child.

This year I hit rock bottom and started counselling sessions at a local church as I did not want to pursue medication. My counsellor was interested by my diverse interests and talents and encouraged me to read about autism. I knew absolutely nothing about either autism or Aspergers. I've now read a few different books and have filled in various online tests and am totally sure that I am living with Aspergers. The realisation was very sudden and emotional. I experienced a massive surge in energy and alleviation of guilt for my past failures, e.g. inability to maintain steady jobs or friendships, constant and humiliating social fumblings. This was followed by a crisis of confidence, as it began to sink in that I have quite serious deficits which will never go away. I have been dwelling a lot on my past and experiencing sadness for my child self who was constantly excluded and did not receive any support. It has been very frustrating. 

I visited my GP in March, who has referred me to a psychologist. I have filled out an autism/ADHD screening questionnaire and am now waiting for a formal diagnosis. I am quite worried about the actual diagnosis procedure as I do not really speak to my parents and I have no-one to bring anyone along that knew me as a child. I feel that I require some extra support, as I am half way through a PhD and struggling with my work, not because of technical difficulties, but due to problems with people, loud noises and lack of attention. I also worry what lies ahead once my PhD is through - I'm not sure I'll be able to hold down a steady job, especially not in high level science.

Anyway, that is my story so far. I'd be especially keen to hear from anyone who also works in academia, or has ever considered downgrading their career, despite expectations, to live a simpler life. 

Cheers!

Parents
  • Have you spoken to anyone at your uni? Student services? Your supervisor? Can be helpful to have the conversation. Often you need an official diagnosis for disability services (or whatever it is called at your uni) to set you up some proper support, but they can offer advice, and your supervisor too might be able to offer some support.

    I'm a PhD student, and yeah, have been massively struggling because of communication issues and executive functioning being all over the place, even though I don't have problems with the technical side of things. I was also struggling with noise but luckily, a lot of people have gone away or are doing various things for the summer, so now I get some days in our shared office all by myself, which is wonderful.

    I have recently disclosed to my supervisor that I was waiting for an assessment (I've messed a project up, my supervisor is currently trying to help me pick up the pieces as I have to hand in a write up and pass to go onto next year, and I needed to explain why). He said probably half the department are on the spectrum, so I was in good company! So you are probably not alone either. I kind of wanted to hold off, felt like jumping the gun to mention it when I didn't have an official diagnosis (though I am 99% sure), but I am glad I told him now. It's taken a bit of pressure off, he is making a clear effort to be more specific about what he wants from me in particular, and for now has taken on some of the responsibility of contacting people for some things for me, and just little things like that are making a big difference.

    I don't have anyone to take for diagnosis-my family are scattered all over the place and no one near me; the service in my area were happy for me to provide contact details so they could get info via phone, email or post. Mind you, I am thinking about getting a private assessment if the cost's not prohibitive, just so I can get the piece of paper my uni's disability services need so I can get some support. I'm a bit worried I won't make it otherwise, even with my very supportive supervisor.

  • Hi James, 

    I don't have an answer to your question about working in academia but wished to welcome you and say that this is a very supportive forum. Every now and again other people working in academia drop into the forum to chat, so you're certainly not alone.  This has also been backed up by a couple of friends who work/ have worked in academia; one of whom says autistics are very common and my other friend is a retired professor with an ASC diagnosis. 

    Regarding shared /open plan offices and noise, this seems to be a common challenge mentioned here. 

    I myself am very easily distracted by background noise and need a very quiet space to be able to focus for any length of time. I wear over the ear headphones and mention to colleagues that I'm needing to finish a piece of work so won't respond for a while. This works quite well, though I do notice that I still feel on edge when there's a lot of movement and activity going on around me even if I'm blocking the noise so my issue isn't solely this. 

    I have in the past shared a very small office with some very loud and chatty (Grrrr!!!) colleagues and found this so stressful that I started to think I'd need to find a new job. Thankfully they moved to a different team so the issue naturally resolved itself. 

    Your university's support services should be able to give you advice as to your current situation and potentially may be able to offer some help whilst awaiting a diagnosis. University is the first life transition many young adults start to struggle and the point at which learning/ social challenges come to attention. It must be quite common for the support services to have contact with students in the run-up to diagnosis.   

    Has your GP /the referral letter given you a sense of how long the waiting list for assessment is? 

    Saz

  • Thanks for your insight. I also struggle with noisy environments (in fact noises in general - I didn't go to the cinema for around 10 years) and am easily distracted. I managed to get a pair of Bose noise cancelling headphones, which have been essential, since I work in an open plan office. I'm not sure how I managed before, as I cannot block out conversations, background noises and people chewing / slurping their tea. I have contacted the university disability service but said they can not offer me any support until I have proof of an official diagnosis. Maybe I will try again, as I think I will be lucky if I am diagnosed before the end of this year.

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  • Thanks for your insight. I also struggle with noisy environments (in fact noises in general - I didn't go to the cinema for around 10 years) and am easily distracted. I managed to get a pair of Bose noise cancelling headphones, which have been essential, since I work in an open plan office. I'm not sure how I managed before, as I cannot block out conversations, background noises and people chewing / slurping their tea. I have contacted the university disability service but said they can not offer me any support until I have proof of an official diagnosis. Maybe I will try again, as I think I will be lucky if I am diagnosed before the end of this year.

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